The Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Consortium, in partnership with the ALS Association, is establishing a repository of biological samples collected from patients participating in an ongoing study that aims to identify and better understand the relationship between phenotype and genotypes in neurological diseases. This study includes patients with ALS, ALS-frontotemporal dementia (ALS-FTD), primary lateral sclerosis (PLS), progressive muscular atrophy (PMA), hereditary spastic paraplegia (HSP) and multisystem proteinopathy (MSP). The biorepository contains a broad array of biological samples collected from every participant at each study visit. Requests for samples will be accepted soon. In the meantime, contact [email protected] for more information.

The Target ALS Foundation has created a multicenter high quality ALS postmortem tissue bank for ALS research. A web-based searchable database enables researchers to query the tissue bank and request appropriate tissue. The tissue is provided with no reach-through claim on data or intellectual property generated from its use.

Whole genome sequencing and RNA seq are being conducted at the Center for Genomics of Neurodegenerative Disease at the New York Genome Center and uploaded to a web-based searchable database which includes clinical, pathological and genetic information for each tissue sample donated. RNAseq profiles are also provided for multiple regions of the CNS including the medial motor cortex, lateral motor cortex, frontal pole cortex, cerebellum, cervical spinal cord and lumbar spinal cord.

The Department of Veterans Affairs Biorepository Brain Bank is a human tissue bank that collects, processes, stores, and gives out brain and spinal cord tissue for future scientific studies. The VABBB provides central nervous system (CNS) tissue and health information to scientists studying disorders such as ALS, primary lateral sclerosis (PLS), progressive bulbar palsy (PBP), and progressive muscular atrophy (PMA), as well as disorders of Veterans of the 1990-91 Gulf War, and posttraumatic stress disorder (PTSD). More information on the tissue request process can be found here.

Brain Banks:

Since 2013, the NIH NeuroBioBank has catalyzed scientific discovery through the centralization of resources aimed at the collection and distribution of human post-mortem brain tissue. Our networked brain and tissue repositories distribute thousands of samples per year to the research community studying neurological, developmental, and psychiatric disorders including ALS and FTD. A web-based searchable database enables scientists to identify and request tissue.

The Netherlands Brain Bank (NBB) provides high quality brain tissue, together with an anonymized summary of a donor’s medical record, to scientific researchers worldwide, with the ultimate aim of increasing our understanding of the human brain and to develop therapies for neurological and psychiatric diseases including ALS and FTD. Researchers can request tissue samples here.

The UK Brain Banks Network is an initiative led by the Medical Research Council (MRC) in the UK. The network provides high quality brain tissue for academic and industry researchers in the UK and internationally. Approval is based on scientific merit, and may take into account ethical considerations. Researchers can search an online database with details of all the tissue samples available through the network.

The Human Brain Bank, located at the University of Aukland in New Zealand, now houses one of the most extensive collections of human brain tissue in the southern hemisphere with tissue from nine different neurological diseases and tissue from over 70 normal brains. Research on this tissue provides vital clues about neurodegenerative diseases such as ALS/MND Alzheimer’s, Huntington’s, Parkinson’s, epilepsy and schizophrenia. To learn more about this resource, including requesting tissue samples, check out their website.

The NSW Brain Banks comprises of two brain banks in Australia established to promote research into diseases that affect the brain and spinal cord. The Sydney Brain Bank (SBB) at Neuroscience Research Australia specializes in aging and neurodegenerative conditions (including ALS/MND), and the NSW Brain Tissue Resource Centre (NSW BTRC) at The University of Sydney focuses on alcohol abuse disorders, schizophrenia and healthy control tissue. To request samples, submit a request here.

The Victorian Brain Bank (VBB), ocated at the Florey Institute of Neuroscience and Mental Disorders, aims to provide researchers, both in Australia and internationally, with high quality, well characterized post-mortem human brain tissue and related samples that will facilitate research into discovering the causes and consequences of neurological and neurodegenerative diseases including ALS. To learn more about the VBB, including requesting samples, check out their website.

Additional Resources

The Alzforum website contains a web-based searchable database of brain banks around the world that collect central nervous system tissue from various neurodegenerative diseases and normal aging controls. The banks share samples and attendant demographic and clinical information with qualified researchers worldwide.

Induced Pluripotent Stem Cells:

The National Institute of Neurological Disorders and Stroke (NINDS) Human Cell and Data Repository includes fibroblasts and/or induced pluripotent stem cells that are derived from patients with Alzheimer’s Disease, Amyotrophic Lateral Sclerosis (ALS), Ataxia-telangiectasia, Frontotemporal Lobar Degeneration (FTD), Huntington’s Disease, Parkinson’s Disease, and healthy controls. A web-based searchable database provides researchers with tools to identify, search and ordering cell lines currently available. Cell lines including isogenic controls for current and new diseases covered by the repository will be added over the next several years.

The Answer ALS team is creating iPS cells that are derived from a population of 1000 ALS patients in the US. Each iPS cell line will be converted to motor neurons before undergoing a comprehensive biological evaluation through multi-omics analysis. A list of iPS cell lines currently available can be downloaded from the website of the Cedars-Sinai iPSC Core facility in Los Angeles, CA, where these lines are being generated.

The Target ALS Foundation has established an ALS stem cell core to provide investigators from academic, non-profit and for-profit (pharma/biotech) organizations access to human stem cells for research purposes. The core goals are (a) to make stem cell models broadly available to the research community (b) to provide appropriately consented ALS-relevant iPSC lines to all members of the community in a manner that is not limited by intellectual property constraints; (c) Provide differentiated derivatives, isogenic controls and reporter lines of importance to ALS researchers;(d) Provide standard protocols and recommended media from the Columbia Stem Cell Core to enhance the success and reproducibility of the ALS research effort. Whole genome sequences and RNA seq is being performed on all the stem cell lines.

The iPSCs are housed Rutgers University, at the same stem cell core as the NINDS repository, and are searchable using the NINDS searchable database.

DNA Banks:

The UK Motor Neurone Disease (MND) DNA Bank was established with funding from the MND Association and the Wellcome Trust, and contains over 3,000 DNA samples, transformed cell lines and accompanying clinical data from people with ALS/MND, family members and controls. A minimal clinical dataset is available for all samples, and extended clinical dataset is available for most of the collection. The samples are stored as DNA, extracted from blood samples from participants. Information on how to apply can be found here.